Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

first PILLCAM test... very nervous... any advice

TaraZ

Recommended Posts

TaraZ Newbie
TaraZ
Posted

Scheduled to have the pillcam on Wednesday and I'm thinking of cancelling and rescheduling until after Christmas. I'm very nervous that this thing is going to get stuck and I'll end up having surgery ...

Right now I am scheduled to work a lot during the next 3 weeks because so many people are on vacation. I have been asking for more hours at work cause I need the money and they gave them to me. But I have a history of calling in sick and they don't trust me ... work is complicated but I wanted to prove I'm dependable so was planning on doing a banner job. Then I scheduled this for my day off not thinking much about it, just wanted to get it done. Now I'm sitting here reading all the horror stories of patients that had an obstruction and then emergency surgery so of course I'm now completely terrified to do this.  Even minor complications would not be good if they keep me from being able to work. Uggggg. I hate this. Also reading how the pillcam doesn't even work sometimes and might not be worth doing?

I am probably over thinking this and should just do it. My symptoms are chronic but fairly mild I think?  Symptoms include...

-loose stools (not diarrhea, just very loose) that are light brown in color and I've had this consistently (2-4 times a day) for about 1 whole year now. Have not had a regular hard stool BM in about 1 year.

-Tired!!! I am young(well 43) and fit and surf and windsurf and I even used to be a professional snowboarder. I am in very good shape but over the past 3 years I have become more and more tired. I have problems sleeping so at first I just ignored being tired. But it's gotten worse. On bad days I can do a little activity (30 minutes to an hour) of exercise and then I'm beat. That's extremely unusual for me but is happening more often.

-over the last year have experienced mild nausea after taking vitamins

-6 months of very possible DH! Started in Aug after eating gluten.

That's about it for symptoms. But hears the kicker... I have been gluten free (by choice, I know I'm crazy) for about 10 years now. So all my tests for celiac disease are coming back negative. The DH I mentioned is what started me down the road looking for a celiac diagnosis. Sorry this is such a long story. Again right now I'm just stressed about the pill cam. I'm reading about it and it's scary. I had a clean colonoscopy and then my endoscopy showed a small ulcer in my duodenum, neg biopsy of course. so next is the pillcam.  Thanks for taking the time to read this. Kinda feeling alone with all this.  

 

'

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I have heard from people on here that they worked well.  Never heard of any getting stuck

i don't know what your insurance situation is, but if you have met your deductible or still have " money" left to spend, it might be financially wise to get it done this year.

if you have been gluten-free for 10 years, these problems probably aren't due to Celiac disease.  It is a  good idea to find out what is wrong.

pikakegirl Enthusiast
pikakegirl
Posted

Understand, diagnosed 2007 and was too afraid to do cam but had endoscope which showed only 2feet undamaged small bowel. Just had pill cam done. I am so relieved because I am fully healed stomach and small bowel. Also had colonoscopy which was perfect. Relieved and surprised due to hard times last ten years. Tips, clean yourself ou as directed. I have a very slow system an after cleanse it take 5 days for me to have bowel movement so I too was afraid it would get stuck but it came out exactly 12 hours later. I used a large stainless stele bowel to catch my bm I was determined to make sure it come through. Be sure to wear cotton top with elastic pants because they put this corset like thing on you that you can not take off. Bending over is hard and chore nearly impossible because the wire and box on the side can swing and knock into things. Don't want to break them. It is easy to swallow with water, I was surprised. or me knowing and seeing the pictures helped me relax and feel confident in my choices over the years of healing and facing the test was worth it but trust your feelings, you are your best advocate.

cyclinglady Grand Master
cyclinglady
Posted

The risk for the pill camera getting stuck is extremely small.  That said, my niece was in the same position as you.  She was three days from getting on a plane to Europe with her family (including me).  I went with her on her visit.  I thought I would meet her GI.  Instead, it was for the pill camera prep.  My niece wisely chose to postpone the camera just before her huge trip.  This was a good decision because had there been any issues, her parents would have stayed home and it would have ruined (you know what I mean) the trip for the rest of us.  

She took the test the week she returned home.  The test went well, but it found that she had Crohn's Disease which was well out of reach for scopes.  She also did not have typical symptoms either.  She's glad she knows where she stands now.  

With your schedule, stress, etc., it might be wise just to postpone it.  But only you can decide as only you know your current health issues.  We knew that my niece wasn't super sick.  She might have an attack (she did on our last trip), but it was manageable.  

Even though you have been gluten free and had the other scopes, did they give you a complete celiac blood panel?  You might have thought you were gluten free, but not really.....it happens a lot!  

 

TaraZ Newbie
TaraZ
Posted
  • Author

Thanks Everyone! I'm doing the pillcam. I think I was just stressing out reading all the bad stuff online. I decided to talk to my boss and explain my situation. It was funny... he got so uncomfortable about talking about it he just let me have an extra day off and said if I don't feel good on Friday then just let him know...

I'm still a little nervous about the pillcam getting stuck and leading to problems but I'll try to not think about that. So today is my prep day, had a light breakfast and then just clear fluids from now on until 10pm. Tomorrow I take the pill. And then I have the next day off of work which is nice so I can make sure this thing passes. Thanks again for the replys. I was going to put it off but my insurance has a big deductible and also it would be good to get this done and over with. Somethings going on with me... I'm currently losing weight for no reason and I have been eating a lot. I usually gain weight when I eat like that. This happened about 2 years ago... I got really skinny and was tired all the time, not like me at all. Never figured out why. Went to the Dr and metabolic panal was always normal, thyroid normal, Normal B vitamins. I was under a lot of stress at the time so I eventually figured that was the reason. Now I'm getting skinny again. It's just like before. Anyway thanks for reading.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Reverse Osmosis (RO) Water

      I found out the hard way that water filters can have starch binders that bind the charcoal used in the filter. Grain starch or gluten can be present in the filter. I’ve been exposed and had reactions. Steam distilled water is safe. Not all places have the distilled gallon containers commonly sold, but smart water is steam distilled and has been safe s...
    2. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not s...
    3. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Water filters are a potential problem for Celiac Disease

      We really need to become more aware of this. When I first had my celiac diagnosis 5 years ago, I searched out all possible sources of gluten. I only recently became aware of filtered water being a potential source of gluten and other grain starch contamination. Gluten exposure in the past, for me, has brought upon distinct repeatable points of bodily pain...
    4. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Pain in the right side of abdomen

      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly. A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly. It's very rare to have only one or two low vitamins in Celiac Disease. B vitamins are water soluble, so any excess is easily excreted...
    5. knitty kitty
      - knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      39

      Blood results

      I'm so glad your daughter got her B12 level checked at last!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,570
    • Most Online (within 30 mins)
      7,748
    Chanty
    Newest Member
    Chanty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • YoshiLuckyJackpotWinner888
      Reverse Osmosis (RO) Water

      By YoshiLuckyJackpotWinner888 · Posted

      I found out the hard way that water filters can have starch binders that bind the charcoal used in the filter.  Grain starch or gluten can be present in the filter. I’ve been exposed and had reactions.  Steam distilled water is safe.  Not all places have the distilled gallon containers commonly sold, but smart water is steam distilled and has been safe so far.
    • YoshiLuckyJackpotWinner888
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By YoshiLuckyJackpotWinner888 · Posted

      I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not sure if the casein was worse or the naturally occurring cheese mold in aged cheddar did it. I am IgG sensitive to yeast. Casein, yeast, or mold in the cheese might have been part or equally bad.
    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      We really need to become more aware of this. When I first had my celiac diagnosis 5 years ago, I searched out all possible sources of gluten.  I only recently became aware of filtered water being a potential source of gluten and other grain starch contamination. Gluten exposure in the past, for me, has brought upon distinct repeatable points of bodily pain which I am now aware of. If I purposely expose myself to gluten, I seem to have antibodies attack certain areas of my body which cause this reaction within 30 minutes of exposure. I can tell rather quickly if I was exposed and it never happens, unless gluten is present. In the past 5 years since my diagnosis , I may have noticed occasional pains or odd sensations after drinking bottled water that was filtered.  It never made sense to me why this was happening.  A few months ago I was at a gas station and purchased a Gatorade filtered water bottle product. Within 30 minutes, I had pains associated with gluten exposure that I had not felt for years. I knew it had to be the water bottle contents because nothing else was consumed all day. This was a wake up call for me. I searched and found out a thread about water filters containing starch binders to bind charcoal, which is used commonly, and I found out that grains are potentially used for the starch source.  Gluten is in certain grains, and according to a study in the past two years, many grain proteins and casein from dairy can cross react with celiac. This Gatorade water bottle had water that was likely filtered with a filter that may have had actual gluten. I am also sensitive to the other cross reactive proteins from grains and casein, but the pains that day were distinct. I can absolutely tell the difference if I come into contact with corn or other grains. The reaction is different. My point is bottled water that has been filtered can potentially be exposing us, if they use starch binders from grain products. We have no real practical way of knowing what water filters may have inside of them, unless a law requires disclosure on the label. This is not only going to affect bottled water, but also all products that were made with filtered water. Since cross reactions to other grain proteins is now a real issue, simply stating  gluten free is not enough. How can you know if your store bought lemonade does not have filtered water with gluten or other grain protein contamination?  Did that kombacha you just drank happen to have filter contamination of corn and you suddenly feel a headache and odd chest pains? Distilled water may be the only safe bottled water. We can’t trust water filters until the law changes and requires processing plants to disclose these contaminants.  I don’t ever have a problem with distilled water as long as it was steam distilled.  Regular bottled water has set off noticeable sensations and pains over 5 years of observing these. The Gatorade water was the worst and most alarming.  Stay safe. 
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly.  A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly.  It's very rare to have only one or two low vitamins in Celiac Disease.  B vitamins are water soluble, so any excess is easily excreted in urine.  Tingling in feet and hands is symptomatic of deficiencies in B vitamins like thiamine, Pyridoxine, and niacin. September 19 2025, "Your daughter needs to be checked for Vitamin B12 deficiency as soon as possible!   The nitrogen compounds in anesthesia can precipitate a B12 deficiency resulting in severe depression.  Please have her checked immediately! The nitrogen compounds in anesthesia (both gas and injected anesthesia) bind irrevocably with the Cobalt in Cobalamine Vitamin B12.  This precipitates a B12 deficiency in people with a low B12 level.  This can happen immediately, within days or weeks or months depending on B12 stores.    I've had medical procedures that required anesthesia and been struck down by deep dark depression and uncontrollable crying immediately, and also within weeks of the exposure.  My doctor put me on antidepressants which only made things worse.  Antidepressants don't correct a vitamin deficiency.   Please have her checked for B12 deficiency as soon as possible!"  
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      I'm so glad your daughter got her B12 level checked at last!  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.